Sunday, January 11, 2009

Apathy is taking over

Tom was discharged on Friday evening - just six hours after our "what if" meeting with the Palliative Conference gang. They like to scare your pants off - the chaplain is the ring leader - and then send you home. Just kidding, they are a nice group of people.

Everything just seems so bizarre as far as Tom's condition. There seems to be no real consensus among physicians. There are so many of them and they each seem to have ever-changing synopses of Tom's condition. Here is a list of people "tending" to Tom: primary care physician, bone marrow transplant physician, neurologist, cardiologist, gastrointerologist, physical therapist, nutritionist, and of course there's me and I know it all.

One physician says he has a clot in his heart and then a few hours later a different physician tells us that the most recent MRI showed no sign of a blood clot. Another physician tells us that Tom may have an infection in his brain, and still another physician says everything looks fine. Now he has signs of diabetes because of the insulin he's getting to counteract a high-dose steroid. It's all crazy! I don't understand it all.

None of them realize just how poorly Tom walks, because he was in a hospital bed the whole time and they couldn't see him in motion. He still can't walk without someone really supporting him, and I believe it's gotten worse - his feet function like seal flippers. I'm so thankful that his mind is funtioning normally though.

Tom believes that he is taking an unnecessary amount of pills. He's taking two different pills for high blood pressure (which is a new diagnosis, by the way), and two different antifungal prescriptions. It makes us wonder if one physician knows what another physician has prescribed. Our pharacist warned me about mixing two of the prescriptions, but the doctor I consulted about this said there was no concern. I believe pharmacists are a little more knowledgable than physicians when it comes to analyzing drug interactions.

With all that being said, there are always things to be thankful for:
1) being at home, 2) having lots of family close by, 3) having lots of concerned friends, especially the Stuarts who continue to go above and beyond by helping us with Katie, many times "at the drop of a hat", 4) having excellent health care insurance, and 5) LIFE!


wiizii said...

Okay, it sounds like I need to come shake things up and knock somebody around to get things straight. Just kidding. Lisa, I know you must be so frustrated and Tom, good grief, what a roller coaster ride. Do you have a blood pressure monitor at home? Maybe you can show marked improvement and therefore no need for both meds. I'm glad the fog cleared from Tom's head and that is really the best news. You'll figure out everything else, I'm sure. Have faith.
Love, hugs,

Katha said...

Although we don't like the reason you sometimes need us, we love it when you "drop the hat" cause it's simply a joy to have Katie around.

And my offer to go down to Northside and "whoop some butt" still stands. I'm with Elise in thinking those docs need to be straightened out. Maybe the communication will get better - and Tom's condition with subsequently improve - once they get their arms and heads around this "palliative care team" thingamajig.

Always keeping y'all in our thoughts and prayers, and always here when you need us,
Katha (and the rest of the Stuart gang)

Richard said...

Is Tom's inability to walk well due to weakness in his legs and joints or is it a matter of balance? Maybe something is affecting his inner ear/ balancing mechanism?
When you get to the end of your rope, tie a knot and hold on. The roller coaster has to go back up too.